Wednesday, November 28, 2018

Christmas and Autism

Good Morning!

Christmas is on it's way which creates a bittersweet time for the special needs parent.  Its easy to concentrate on what we cannot do, or what our child cannot understand during the holidays.  We can tend to have this Rockefeller Painting imagery of what we want Christmas to be for our family.  Its this unintended setting of expectations that can lead to our disappointment.

For our family, Christmas was made more complicated by Tyler's worsening behavior during the winter months.  As I've discussed many times, Nov 1 - Feb 28 were always his "dark period".  Regardless of what we tried he was extremely agitated and edgy during this time of the year.  Christmas, with the added stimulation that he didn't really understand, seemed to just contribute to further behaviors and frustrations.  I recall it being so bad one year that I had to stay upstairs with him while everyone celebrated the holidays downstairs.  To this day Tyler often doesn't open his gifts for days or weeks after Christmas because he just doesn't WANT to.

I don't remember Rockefeller painting a Christmas scene that looked like that.

So what does Tyler need from Christmas?  What does he really want?  As with so many subjects, we have had to separate what WE see as ideal, versus what is ideal for him.  

  • He wants security in the arms of his family.  He wants to feel comforted in a world that is scary to him, especially when it is cold outside, lights are blinking, and there is a dang tree inside of the house!

  • He wants his trusted people around him.  He enjoys seeing loved ones, his church, and close friends who give him special gifts like smiles and hugs.  These are gifts he fully understands.

  • He wants warm food, warm clothes, and a warm bed.  
Stop and read those 3 points again.  When I wrote them, and read them again, I wondered who really understands the real gifts of the season and who doesn't!  The greatest gifts for him are warmth, peace, love, and security.  What a simple and profound statement.

With all of this in mind, we have scaled back what WE believe Christmas should be for him, and worked to make sure he was getting what he really wanted.  We don't shower him with material things or make him open a bunch of presents.  Instead, we get him perhaps one or two things that will ensure his security and comfort.  We make sure we, and his loved ones. see him around the holiday and tell him how very much we love him.  And most importantly, we ensure that he always has a life where he is cared for and respected.  

It's not a mystery when you really boil it down....its just providing the gift of security and love. 

Be well and God bless.    Tom

Wednesday, October 31, 2018


Ah Halloween....a time of trick-or-treating, parties, fun!  Unless you have a child on the spectrum that is.  Not to be a killjoy but Halloween marks the beginning of the holiday season, which can add additional stress to the already stressful life of those with special needs.

When Tyler was younger we INSISTED that he go trick-or-treating like every other kid.  After all, we wanted him to have every typical experience that every other child was able to have.  So....we dressed him up (got kicked in the process)....watched him absolutely hate whatever it was he was wearing....dragged him out the door (still kicking)....gave him a pumpkin bucket (for him to hit us with)...walk to a neighbors door (which he kicked)....have him hand them the pumpkin and walk away (still swinging).  We repeated this "fun" about 3 more times before we said we had all had enough for one evening.  We tried this for a few years before we got the hint that maybe this wasn't his idea of a good time.  

I don't mind that we TRIED, after all you should always TRY, but perhaps we should have adjusted sooner to something more in his comfort range.

Another interesting topic that comes up at Halloween is whether a costume is "offensive" or not.  Specifically it was reported that Shawn White (snowboarder) dressed as "Simple Jack" from the movie Tropic Thunder.  To quickly explain, Ben Stiller plays a fading actor who once took a role as "Simple Jack", much along the lines of Forrest Gump or I Am Sam.  He plays a mentally disabled young man.  The movie bombs and he is ostracized for how bad it turned out.  Ben Stiller's character is a parody of a struggling actor trying to land that one memorable performance.  In fact, Simple Jack is a parody character being played by a parody actor.  I read an article and it explained that the Special Olympics made a statement that they were disappointed and felt that this characterization was harmful.  I think that's fair.  Shawn apologized and said he meant no harm to anyone in the special needs community.  I believe that too.  I don't think this is the sort of thing we should vilify him for quite honestly.

So where is the line between parody and mockery?  That is not something I can answer.  I know that personally I consider intent in someone's words or actions.  Shawn, I can only assume, was trying to be clever with a funny movie character parody.  The problem with that is, if you never saw the movie, he looks like he is playing a mentally retarded person for Halloween...which isn't funny at all.  

As special needs parents we are going to be more sensitive to things for sure.  My advice is to consider the overall character and intent of a person's actions before passing judgement.  Mistakes happen even to well-meaning people.

Enjoy a safe and happy Halloween!    Tom 

Tuesday, October 30, 2018

Defining Affection and Love

Relationships are complicated even in the best of circumstances.  "Typical" individuals can have a difficult time expressing themselves, especially in a way that other people WANT them to.  Think about it, we all interpret expressions of love from our own viewpoint.  After all, it's what our heart knows!  So when someone else's expressions don't fit into that mold, we may feel slighted, or misinterpret what those things really mean.

I often relate things to the movie "Rainman" because while the movie is certainly not perfect in it's depiction of special needs relationships, it does have some shining moments where it pinpoints things exactly.  Case in point, Charlie (Tom Cruise) teaches his autistic brother how to dance.  It is a sweet moment where the brothers connect in a new and profound way.  At the end of the song Charlie reaches out to hug Raymond, who immediately recoils and panics.  Charlie is left feeling confused and dismayed.  But here is the important part, by the end of the journey Charlie learns how to be affectionate with Raymond on HIS terms, and the two were much happier.  Charlie learned that by caring for him and about him, along with very subtle physical contact, he could gain Raymond's trust and affection.

Let me relate this to my own Tyler.  Right now Tyler is in a point of his behavioral cycle which is not his happiest or warm-and-fuzzy-ist.  Of course when the family sees him at church on Sunday we are excited!  We miss him and we want to squeeze him!

At the moment, he isn't sharing our enthusiasm so he gives us a quick hug and heads for the exit to get back to his home.  We would be fooling ourselves to say that, while we fully understand it, we don't feel hurt by it.  We want him to understand OUR love and OUR affection and we want him to give it back!  But so often being on the spectrum doesn't translate that way...or perhaps at all.  We tell him we love him, give him all the hugs and kisses he can stand, and we send him on his way.  Right now its what he needs, and that is ultimately what matters most.

So take heart if the loved one you care for doesn't quite receive or reciprocate affections the way you would hope they would.  Most likely it isn't personal.  Remember that the messages they process are way different than how we process them.  To be successful as caregivers we have to remember to love them in terms that they can understand and trust, and if you can do that, it may just open the doors to a better relationship.

Be well and God bless.


Monday, October 29, 2018

Cecil and David Rosenthal

Cecil and David Rosenthal went to church on Saturday in a quiet, sleepy town near Pittsburgh.  As special needs brothers in their 50's they were inseparable.  They also loved to attend their church, where they were well-liked and appreciated.  They never missed a Saturday service.  They were loving, gentle, and inspiring men.

On Sunday I couldn't help but watch my son as he was sitting in church.  It was impossible not to think about the synagogue in Pittsburgh and how those worshipers were in their sanctuary just like him.  They felt a sense of safety and belonging.  They were innocent, just like Tyler.  And as it turns out, they were vulnerable, just like Tyler.

It's a nightmare that as special needs parents we think about more often than we would like to....what if this happened in my church?  What if this happened at his school?  What if this happened to my son?  How do I protect him?  

Cecil, David, and Tyler rely on all of us to provide a safe world for them.  They rely on US to be their voice.  When they aren't getting the services they need, we have to stand up for them.  When facilities don't adequately provide for their care, we have to stand up for them.  When laws need to be evaluated and changed, it is up to all of us to fight for that change.  Now more than ever as caregivers we must make our voices heard.  Every year the need for quality care increases while the funding continues to be decreased.  Every day the negative rhetoric intensifies and the positive messages we need to hear grow more silent.

Cecil and David need to remain in our hearts but more importantly, they need to start being at the core of who we are.  Our decisions every we treat each other...our priorities...our leaders...need to start and end with values like compassion, faith, and understanding.  Without these values we cannot honor Tyler or Cecil or David.  We have to be willing to be the voice for what is right.

Our boys are depending on it.  Cecil and David....this is for you.  

Sunday, October 28, 2018

Why Words Matter

Words matter.  Words can be a powerful and wonderful tool to inspire others.  Words record who we are and where we have been.  We can use words to comfort our friends in their time of need.  How often does a smile and a kind word from a stranger make us feel good about ourselves?

Some of my fondest memories in the years Tyler was at home involve times when strangers expressed kindness and compassion toward Tyler.  I remember being in a restaurant and an older couple approached our table on the way out.  The gentlemen asked if he could give Tyler a few dollars because he was inspired by how well behaved he was.  Those are the experiences that stay with me as though they happened yesterday.

Words can also be devastating.  I remember how we felt when a caregiver told us that a young boy and his father made fun of Tyler when she took him out to eat.  Fortunately Tyler didn't realize he was being mocked, but it hurt to know that someone would do that to him.

There are many of us who are leaders in one form or another.  Some lead families, congregations, businesses, towns, states, or countries, and I truly believe it has to start with all of us.  We have to be aware of what we say, and how we say it.  We fool ourselves that people like Tyler don't hear us or understand us, but they do.  They are hearing what we say, and watching what we do.  That's why I believe we need to speak to each other like our sons are listening, and our daughters.  When we stand before them and represent something, we owe it to them to do it with dignity, love, and humility.  Unfortunately it seems we are seeing less and less grace and more and more contentiousness.  For Tyler, and for everyone who so desperately needs us, we have to stop this cycle.

Words do matter.  Its time that we remember that,  and its time that we use our words to bond, and to heal, and to teach the right things.  Our children deserve that.  Tyler deserves that.

Be well and God bless.   Tom